May 15, 2002

May 15th (part 1) Yesterday another x-ray showed air passing through the bowels, but not quite as well as hoped. Giving Ben food is still a possibility, however. They may try that today. We spoke to the Pulmonary Specialist yesterday. He performed a bronchial scope which showed no blockages. The bronchial scope entailed inserting a tube-like camera down his ventilating tube to look at the upper airways and lungs. He was not able to look at the nasal/throat passages because of all the tubes. This doctor feels that once all other possibilities are ruled out, we may be looking at a condition known as congenital hypoventilation syndrome. Basically, this means that Ben's ability to breathe on his own is somehow hindered. That part of his brain just might not function correctly. This could be treated with a tracheotomy and a portable ventilator. This could allow him to have a somewhat normal life. We are still awaiting the results of three or four metabolic tests. They are attempting to keep him stable while we await answers. Ben really appreciates all the e-mails he's receiving. Thank you Uncle Ian for setting up this great website!!

May 15th (part 2) The highlight of the day was Jenny's opportunity to hold Ben in her arms. Jill, the nurse, asked if we had been able to hold him since his admission and when we told her no, she asked Dr. M (who just took over Ben's care) and he said it would be OK. Jenny held Ben for an hour or two and both of them were so happy. It was beautiful.

Dr. M took over Ben's care and after consulting with Dr. C, the pulmonary specialist, and Dr. B, the pediatrician, they decided to try again to gradually wean Ben off the respirator. He is currently being given twenty breaths a minute, although his nurses say he is consistently breathing on his own as well. They will gradually reduce the number of breaths the machine is giving and hopefully Ben will continue to take more and deeper breaths on his own. This process will probably take days if not weeks.

They are also still concerned about his GI tract but aren't planning any action until they have his breathing under control. The air they have been 'feeding' him has not moved smoothly through. Dr. B said a possible reason for this is a syndrome where a portion of the large intestine has a deficiency in the involuntary nerves that help push things through. He said they often see this syndrome in people who have congenital hypoventilation syndrome. This is also a treatable syndrome but would possibly require surgery to remove the affected portion of the large intestine. The Hypoventilation syndrome and the Hirschprung's (GI tract) syndrome are still both theoretical diagnosis. We are still waiting for the results on several metabolic tests that are pending. However, we did receive news that one of the tests returned with normal results.

Momma holds Benjamin in the NICU for the first time. 13 days old.